Just looking for clarfication. My apologies if this is redundant somewhere else.

I recently had my symptoms revisited by a neuro-otologist. He told me that my symptoms are definitely NOT BPPV.

However, some years ago I did have the classic symptoms of BPV and did not want to do the exercises; was told that my symptoms would probably go away on their own with time.

This neruo-oto recently told me that BPV does not have symptoms if a person looks left to right - only up and down. I disagree with that.

Anyway, I still have a woozy head, but no BPV feeling of actual spinning most times - this woozy head feels unclear, a tendency to feel like I am going to spin, a feeling in my head almost like the BPV ("buzzy" during the spin sensation), problems with spin sensation lying flat or on my side, and problems looking down for long periods of time. I can look side to side, and up and down, but with some visual discomfort. I feel like I am in motion when I am not. I feel that my environment is in motion when it isn't. Sensations of motion vary.

BPV symptoms were work-aroundable for me. I was able to go to work and drive, as long as I didn't look or lie in certain positions that would being on the buzzy spin sensation.

Can BPV linger after the spin sensation has passed? Meaning, all the other (most bothersome) symptoms I have listed above?

PS - This neuro-oto is known for lack of bedside manner. He ALSO told me that he felt none of my symptoms were inner ear related AND that since "it didn't hurt, it didn't make me nauseaus, and I was able to function/go to work", that I should learn to adapt better. Yeah, right.

xo

Hi Wowwwweeee,

I can't answer you question but I wanted to know if you tried the MEP. I don't have any "classical" BPPV symptoms" but a few weeks ago I was at the worse of my worse and did the exercises. I think that they helped a little. I'm still dizzy 24/7 but they helped me get back in a zone that I was familiar with.

After 3 years of this condition I have learned not to believe all what the doctors tell me (when it comes to this condition). They don't seem to know a lot, especially when our symptoms doesn't fit a specific catagory.

I found the results of a survey (questions asked to people who are dizzy) on the web that was interesting. I think I might print it and bring it to my doctor so he can learn from it. I will ask the moderator if he/she can put the web link in the information archive.

AFAIK you can get positional symptoms with any vestibular problem, which doesn't make it BPPV - BPPV is separate diagnosis which is easily spotted during an exam by a good neuro-oto doing the right tests. Just to confuse things, BPPV can also occur secondary as a result of other vestibular problems.

BPPV can occur in any plane,so it could occur more up/down than left/right, but I think the dix-hallpike (test the neuroto performs) is designed to show up BPPV in all planes.

Hi W

..."Can BPV linger after the spin sensation has passed? Meaning, all the other (most bothersome) symptoms I have listed above?"...

Sure!!

---and the older you are---the more likely that is to happen---so they say!!

From the Northwestern Univ Web Site:

..."The symptoms of BPPV include dizziness or vertigo, lightheadedness, imbalance, and nausea. Activities which bring on symptoms will vary among persons, but symptoms are almost always precipitated by a change of position of the head with respect to gravity. Getting out of bed or rolling over in bed are common "problem" motions . Because people with BPPV often feel dizzy and unsteady when they tip their heads back to look up, sometimes BPPV is called "top shelf vertigo." Women with BPPV may find that the use of shampoo bowls in beauty parlors brings on symptoms. An intermittent pattern is common. BPPV may be present for a few weeks, then stop, then come back again."....

Note their comments on "An intermittent pattern.....etc..."

In the majority of the BPPV cases---the tell tale sign of BPPV---among other signs---is a "latency" and "fatiguing"

---goes something like this---using my right side BPPV and the MEP as an example:

Go down on the right side(as in MEP)---vertigo(actual or feeling of it)--start is delayed by about---5 to 10/15 sec's("latency")----then----happens---lasts for a few sec's---15/20 sec's etc...---then stops("fatiguing")

Now if I complete--the "Full MEP" manuver(i.e.,all three positions)---and immediately do it again---when I go down on the right side(as in MEP)---it is likely---that---this time---I will not get any vertigo(actual or feeling of it)---if I do----it will be slight---and on doing the "Full MEP" for the third time---will prob not get any thing on right side-----so there is a "Latency" & "Fatiguing" associated with each individual right side down---if you will---and a "Latency" & "Fatiguing" associated with each set of "MEP's"---if you will that---you/they(doc's)---would track---to determine---BPPV.

While it is not an absolute---and also not the only indicator---it(latency/fatiguing) is a one of the "strong indicators" of BPPV.

The "latency" and "fatiguing"----like I said does not always occur in BPPV---but---for most people it does

Of course---another tell tale sign is:

..."symptoms are almost always precipitated by a change of position of the head with respect to gravity."....as the Northwestern article says

As for the eye position---once a vestibular prob/injury occurs---it disrupts the neuron pathways---for eye movements---so you can feel strange(unablanced/dizzy,etc..) which ever way you move your eyes

This is---not to be confused with the Dix Hipike..etc.. maneuver---that doc's use to diagnose the various vestibular injuries....

Have you tried the MEP???

May be more then you wanted to know/hear---but---that is---the way it is with this junk----your on your own---for the most---part---to figure it out---tracks back to doc's comment---learn to live with it

By-the-way---you do not have to do that last part---you can understand it---and then beat it----they---doc's---just don't want to make the time---but you can.

:cool:

Subs, how can we "understand and beat it?" That is the million dollar question for me. Because, like Wowwweee I have doctors that also tell me there is nothing to be done and that I must just live with it. Well, my life is falling apart doc!! Thanks for nothing Mr. MD.

Now that I've gotten that out of the way...I had another question as well. I have been pondering and pondering these past few weeks because I am wondering if I do in fact have BPPV or if it's something else. I am going to a new doc on Friday but my neurologist used the hallpike test on me and found that my right side produced nystigmus. BUT the first time I had it done during a "good" period, there was no nystigmus or vertigo when he did it. So how did I not show the signature symptoms of right-side BPPV with the hallpike, but yet I DID have dizziness symptoms at that time. Granted the dizziness symptoms were worse that second time but they WERE there that first time but he didn't see anything so my first diagnosis at that time was migraine related vertigo. This is all craziness to me that I just don't understant because I haven't experienced violent spinning since last September at the onset of this junk but I HAVE had very debilitating dizziness and visual disturbances since then that have been bad on and off. And I also have that constant sense of motion and rocking. Since that is not related to my head position but rather constant, would this be a symptom (maybe residual) of BPPV? I'm sorry to ask the same questions but in different words what seems like over and over but I am so confused and unfortunately my doctors aren't so helpful! Thank goodness for you kind people!!

Kris: Vertigo on positional change can be a symptom any vestibular dysfunction - it doesn't make it BPPV, BPPV is a diagnosis with a specific cause which is usually fairly obvious on testing by performing the dix-hallpike test

The Dix-Hallpike test is specific for the diagnosis of BPPV. While sitting on an examining table, the patient's head is turned either to the right or to the left. The patient is then moved rapidly from a sitting position to a supine position with the head hanging off of the back of the examining table. The patient is instructed to keep his/her eyes open so that the examiner can see eye movement during the entire procedure. If BPPV is present, vertigo will begin after a latency of 5 to 10 seconds and usually will last 30 seconds to a minute. Rotary nystagmus will occur and the patient will complain of dizziness. After the nystagmus and the vertigo subside, the patient is returned to the sitting position. The rotary nystagmus may reverse in direction and the patient may again experience vertigo. If a positive response occurs, the same maneuver is repeated. Usually, the severity of the vertigo and the rotary nystagmus are reduced during the repeat maneuver. This reduction is termed "fatigue". The opposite ear is then tested in a similar fashion. The offending ear is the one that is toward the ground when BPPV occurs during the Dix-Hallpike maneuver.


However, it is not too uncommon for BPPV (as a physiological problem) to occur secondary to other vestibular problems, such as labyrinthitis - but again this is easily seen on testing.

Now that I've gotten that out of the way...I had another question as well. I have been pondering and pondering these past few weeks because I am wondering if I do in fact have BPPV or if it's something else. I am going to a new doc on Friday but my neurologist used the hallpike test on me and found that my right side produced nystigmus. BUT the first time I had it done during a "good" period, there was no nystigmus or vertigo when he did it. So how did I not show the signature symptoms of right-side BPPV with the hallpike, but yet I DID have dizziness symptoms at that time. Granted the dizziness symptoms were worse that second time but they WERE there that first time but he didn't see anything so my first diagnosis at that time was migraine related vertigo. This is all craziness to me that I just don't understant because I haven't experienced violent spinning since last September at the onset of this junk but I HAVE had very debilitating dizziness and visual disturbances since then that have been bad on and off. And I also have that constant sense of motion and rocking. Since that is not related to my head position but rather constant, would this be a symptom (maybe residual) of BPPV? I'm sorry to ask the same questions but in different words what seems like over and over but I am so confused and unfortunately my doctors aren't so helpful! Thank goodness for you kind people!![/QUOTE]

Kris,

I completely understand your frustration. My first episode of BPV was in December of 2002. A couple weeks later I went to my GP after I'd done some reading and figured BPV was what I had. She agreed and tried the hallpike, but couldn't get the traditional response that meant BPV. She told me it was probably inner ear and there was nothing I could do but let it subside on its own (blah, blah, blah). After a few weeks it did subside, only to have all the other residual, peripheral symptoms you speak of kick in at about the 3 month mark. Then the real hell began. Everyday was a mixture of brain fog, cognitive problems (forgetting words, transposing letters, etc.), anxiety, visual disturbances, and all the other fun stuff.

At the 6 month mark, I developed trampoline walk (that sense of weird bouncy motion when walking). All along up to that point I'd never had a return of the violent spinning and nystagmus that is characteristic of BPV. When the trampoline walk started, at exactly the same time the spinning returned when I turned my head to the right. I remembered what my ENT had told me, that it wasn't true there was nothing that could be done, and that if it happened again (which he warned me there was a good chance it would) that I should come to him for the Epley. I went, and the Epley worked great. I've never had the spinning since, and that was July 1, 2003. It did take a long while to crawl out of the other symptoms, though. I had to retrain my brain to do many things, and I still have blips that last for up to a couple weeks where I feel the trampoline walk stuff and slight motion sensations when I move around, but otherwise I'm basically back to my normal self.

I guess this is a long way of telling you that yes, BPV can be present with the violent spinning and nystagmus, but even after that has somewhat subsided or you've taken care of it with the Epley, there can still be lingering symptoms that can last for months. This is where I think Subs means you just need to learn as much as you can and understand what's going on, then you can beat it. Once you know what it is, and that it's not going to kill you, and that you need to get on with your life as normal as possible so your brain can compensate and you can get better, then you can make progress and crawl out of this hellish hole. Get mad at it and fight back! Go out for walks even when you don't feel like it to clear your head and help your brain learn again. Eventually it does get better. Like Subs always says, for many of us, this is the fight of our lives. The key is, you WILL win.

Cheers,
T

Hi krisdance83

Since Terry covered your last questions---I'll take a shot at trying to answer--- the first:

..."how can we "understand and beat it?" That is the million dollar question for me."...

(The below is focused on BPPV injuries---not other vestibular problems.)

For most people who get BPPV---well over 50%---if diagnosed correctly---70-80% have the Epley done---and that moves the ear rocks out of the canal---with that done---all that is left---is the compensation part--which can take some time--depending on the individual--then it is over---except for a FEW.

For those few-------

The key is getting a correct diagnoses

---not easy to do---with a vestibular injury

---since few medical types really have the training to sort out---what can be a very, very complex injury---nor do they see enough cases in the course of their practice---to become expert at it.

and---while there are tests, MRI's, ENG's,etc...to help---no direct tests exist---for the inner ear----to determine what is wrong

---that means---it is a guess---based on a set of indirect tests/medical history of the patient---(like the D/H manuver,etc..)---where they are using the physics associated with vision---to determine---if there is a vestibular injury

---the output---of that drill is a guess---with a probability attached to the guess---how good that is---highly depends on---the experience of the medical types---because that increases the probability---that they have guessed correctly.

So---you start to beat it---by understanding---what things you need to do first and why---

---first you have to grasp the complexity of what your dealing with and

---second take/make all necessary efforts to get a correct diagnoses

---the first you can get from this board/books,etc...and

---the second---means---understanding---that most medical types---are not well versed---in this area---which is why there are "Centers of Excellence" established for this area

---such as Northwestern Univ, Univ of Penn, John Hopkins, etc....---For those FEW--who can not shake this BPPV junk---they need to find a very experienced doc---or get to one of the Centers of Excellence---no one there will tell you "you have to learn to live with it"

----unless its true--in 99.xx% of the cases it is NOT!!!---and they will know when it IS!!

Most people could live with that--cause---that maybe as good as it gets with this junk--for a FEW!!

:cool:

This perspective is based on BPPV as a singular vestibular disorder, not accompanied by another vestibular disorder (at the same time).

I would like to add that most of the info out there and what most patients suffer from is posterior canal BPPV. There are as well anterior and horizontal canals in the ears and the symptoms vary as well as the treatments (positioning).

BPPV can be in one or both ears....and if in both, not necessarily in the same canals. It happened to me.

The otoliths can be connected to the cupula(s), or moving through the canal. This means treatment for one might not work for the other.

The patterns can be self-limiting (days, weeks or months); remitting/recurring (off and on for long periods of time (months, years); persistent (continuous).

The intensity of attacks can be mild (no symptoms between episodes of vertigo); moderate (vertigo upon specific head movements plus symptoms such as dizziness/lightheadedness, etc between episodes); extreme (vertigo produced with most/any head movements with constant nausea).

Some docs believe the above, others do not. It's unfortunate that if in fact some patients fall within the above criteria and the doctor doesn't follow that school of thought.

I would think that the testing for positions be appropriate to the possible canals affected. I believe that if the canals are affected, the symptoms are somewhat different compared to if the cupula is affected. I also believe that for some of us (as also believed by my first doc) that some of us have these free floating crystals that are not set on staying settled. I believe that when these are kind of floating about when we don't have vertigo, that symptoms such as feeling fuzzyheaded, drunk, "off"...etc.

I've had symptoms where I could almost SWEAR I was getting primed for another attack. But, nothing happens...whew! I'm totally amazed.

I personally don't think it's black and white....but the doctors and internet information seems to follow the trend of the most popular and it's constantly regurgitated. It's only to the detriment of the patients who are struggling to exist through the frustrations and mind-boggling reality that "no one seems to know" and are left in perpetual limbo.

We who have BPPV learn to "live with it"....because we have no other choice. Plus, the reality is that one can have it forever. But, there are treatments to help limit/stop the attacks. The home treatments are definitely a big step in the right direction. There's nothing to lose by trying the different maneuvers if one is in constant misery. I've made myself worse on occasion...but I've also made myself better.

They're learning more and more about BPPV....I wonder what the perspectives will be in 5 years. I've seen and experienced many changes in philosophies and treatments in the 38+ years so far! :eek: There's definitely hope! Hang in there!

Best to you all,
quincy

Hi Quincy

Excellent points/write up/contribution & well said----for those "Few"---there is definitely hope---no question about that!!

:cool:

Hi Subs, Thank you for your kind comments. By the few, do you mean those of us with only BPPV as a singular disorder and not as or coinciding as a secondary disorder?

In the 80's when aerobics was so popular, my doctor said they had an influx of women and men with BPPV symptoms. Now, it seems to be yoga. I tried one of my friend's rebounder for about 10 seconds.....WOAH!!! The pressure in my head was very weird! I got off that in a hurry....don't even know what possessed me to try it. Anyway, escaped with no negative consequences.

Have you done any investigation into saccule or utricle (otoconia) disorders? What bearing do you think that could have on symptoms once a person has VN or other before BPPV?

Glad to hear you're doing well.
quincy

Hi Subs, Thank you for your kind comments. By the few, do you mean those of us with only BPPV as a singular disorder and not as or coinciding as a secondary disorder?

In the 80's when aerobics was so popular, my doctor said they had an influx of women and men with BPPV symptoms. Now, it seems to be yoga. I tried one of my friend's rebounder for about 10 seconds.....WOAH!!! The pressure in my head was very weird! I got off that in a hurry....don't even know what possessed me to try it. Anyway, escaped with no negative consequences.

Have you done any investigation into saccule or utricle (otoconia) disorders? What bearing do you think that could have on symptoms once a person has VN or other before BPPV?

Glad to hear you're doing well.
quincy

Hi Quincy


..."By the few, do you mean those of us with only BPPV as a singular disorder and not as or coinciding as a secondary disorder?"....

Yes

---but it was an oversimplification---focused on the one question that had been asked

---in reality---as you know

---- BPPV can be caused/be a part of other injuries & one can---be cured of those injuries & still be left with BPPV.

That said---think---the following is accurate---based on "todays" medical research/knowledge----hopefully "tomorrow" it will have changed:

From one of the "Centers of Excellence" in this area--Northwestern Univ:


...."In general:

Dizziness is a common symptom, potentially deriving from many categories of illness, and our diagnostic acumen and technology is not perfect. It is not unusual to conclude that one simply doesn't know why a person is dizzy, even after a very thorough evaluation."......


---there is still a significant amount of knowledge---to be developed--to get an understanding of what the heck---is going on---think they will get there---but it will be a long slog!

..."Have you done any investigation into saccule or utricle (otoconia) disorders?"....

Yes---at one point in this madness---that's what I thought/was sure I had---because of the "gravitational" aspects of my symptoms

..."What bearing do you think that could have on symptoms once a person has VN or other before BPPV?".....

---lot of thought---behind that question:cool:

Think---the symptoms would be---more of a pronounced downward pulling---i.e., a feeling of being constantly pulled down----but would have to go back and look at it again.

Yep---still at 100%---knock on wood!!

:cool:

Good Morning Board,

Thank you all for these informative and thought provoking replies. I can see time and care went into these responses, and for that I am grateful (as always) for taking the time with my questions.

My doctor and a new ENT thought that a course of Vestibular Rehab may help alleviate my symptoms, or at least aide in my symptoms lessening.

I am very scared to try any kind of movement that may increase my symptoms, or make my symptoms get worse in terms of not being able to function.

Currently, although I am still unnerved and limited by my woozy head, I am able to go to work, and enjoy things in moderation. I doubt that I will ever be able to go on amusement park rides again (eegads) but I am more mobile now than I have ever been since I started experiencing these symptoms.

It will be ten years on April 9, 2005.

Lately (past few months) my symptoms have changed to add a feeling of motion all the time. I had this years ago with onset, and found it distressing.

I still will have the elevator feeling, as well as the trampoline feeling, moreso in the past few months. I haven't had to deal with this in a while.

Things still throw me off like switching from high heels to flats (one example).

I have not been able to watch TV as comfortably because movement on the screen can make me feel a bit dizzy. I have not attempted a movie theater in months for the same reason. This has been more noticeable lately. Prior to the last few months, this was a concern but not a real problem.

I am able to go to work and be social again. I do have my days/weeks where I am not as perky or able to do much, but I persevere. I would not want to have my symptoms aggravated to the point where I was not able to go to work. I try to maintain a normal routine despite my symptoms and the anxieties that come with that. I feel that I need to be mentally healthy to deal with these symptoms, and maintaining my usual routine to the best that I can is important to me.

So, that is why I am hesitant to try therapy. Most of the MDs that I have seen honestly don't know what else to do for me at this point. I have seen "the best of the best" in my area. My primary MD is very willing to send me to a Balance Center or anywhere else that I want to go. I am just nervous that any type of phsyical treatment may make things worse. At least now I am out and about, although it is difficult at best on some days.

Just airing some nervous nilly thoughts.

xo

Woweeeee Hi, I have had bppv for six years when I went to my therapist 2 months ago she did every manuever to check to see if I had particles in any canal in my right ear! After we were sure there were no particles where they did not belong we started motion sensitivity therapy! If your vestibular system is out of sink you could feel anything or you might have vision or balance problems! I was put on a balance platform and fell foward on two moves when they made me close my eyes and the platform tilted down toward the front! The test also showed I place more weight on my rightside thru most of the test!my therapist knows what exercises to give me because she saw what area I am weak in! ALSO you said you dont want to get in a position that bugs your bppv!!!!!!!!! That is where you need to ATTACK! I WAS AFRAID to bend over and look to the right because that is what made my vision bounce and spin on the right side of the room! NOW I get on my knees and turn my head to the right and bend over and place my ear on the bed !!!!!!!!!!!! This use to scare me, now nothing happens!!!!!!! I have problems with my vision tilting but I walk and do 360 degree spins to the right and to the left and while I walk I LOOK UP AND DOWN this seems to bother alot of bppv peolpe! ALL of this seems to be helping my tilting in my vision It seems to make it more mellow! I WANT TO try to get on a machine they put jet pilots on that suffer from vertigo! HAS ANYONE TRIED THE SPORT KAT a computer you look at while on a platform and it stops the funky balance feeling people have ???? GOOD LUCK WOWEEEE

Hi Billy,

You sound so positive - and fearless! I am trying to work up to the fearless part for therapy. I will probably give therapy a worthy try; I just have to work up to it.

The thing is, when I feel good, meaning my symptoms are at a less level where I feel pretty good, I am nervous to aggravate them up.

And I am not sure whether I should do the therapy when I am in "feeling good" mode, or wait until I am more symptomatic.

I think at times I need more of Motion Sensitivity Therapy, than Balance Therapy. if there is a difference. I'm going to post a new thread on an issue I have with sensation, this morning.

Thanks for sending some of your positive energy about therapy my way.

Wishing you a good day.